Tourette’s

When I was in the second grade my school called home to inform my parents that their son had been observed rolling his eyes repeatedly, looking to his left over and over, and even licking his arms. This was not to be taken lightly, the school advised, and suggested that something might be seriously wrong with me. From that call forth I was pulled out of class almost every day to meet with the special education specialist and/or school psychologist, and after school my mother drove me to hospitals and doctor’s offices all around the San Francisco Bay Area in hopes of learning why I did these things.

I, of course, was well aware I was doing these thing. But no matter how many times I was told “to just stop it,” or that “I could cut it out if I really wanted too,” I couldn’t. I sure wished I could though. After all each eye roll angered my teacher, each glance to the left made the kid sitting beside me uncomfortable, and each lick of my arm drew howls of derisive laughter from my classmates.
After enduring numerous MRIs (that revealed nothing) and taking a medley of medications (that did little more than cause me to fall asleep at my desk) a doctor diagnosed me as having a chronic tic disorder that fell on the Tourette’s spectrum. He suggested that we wait to see how things progressed because 85% of kids with tics either see them lessen or go away entirely as they grow into adults. Fortunately, I ended up among those 85% of kids. Unfortunately, I wasn’t among those whose tics went away entirely. Instead, my tics just lessened while remaining a major annoyance in my life.

Like many people who suffer from chronic tics, I learned how to “cover” them when out in public. For example, I somehow manage – most of the time – to move my tics away from my face to places less visible such as my back and stomach muscles. These back and stomach tics often prompt people to ask me if I have the hiccups, and instead of telling the truth, I just say that I do. Similarly, when people see me blink too much and assume I have something in my eye, I don’t correct them. I sometimes have to remind Heather that I’m not rolling my eyes at her, it’s just a tic. And when someone makes an all too common Tourette’s Syndrome joke, I just let it pass. I’ve been able to cover this way, for the most part, the entirety of my adult life.

Even at their most manageable, however, my tics still cause me great trouble. There is pain and soreness caused by repeating the same action over and over, there are back spasms from the constant flexing of my back muscles, and there is always a kid around to ask me why I keep “making that face” (thus reminding me that I don’t cover my tics as well as I think I do). Still, these are the days I long for, because there are also times when my tics get worse. During these flare-ups (for lack of a better word) I am constant in pain, exhausted, afraid to go into public, and even reduced to tears of frustration with it all. Right now, unfortunately, is one of those times.

I don’t know why my tics are so bad right now – my flare-ups aren’t stress related and come at all times – so there is no obvious cause. This makes sense, I guess, since Tourette’s and chronic tics have no cure, and are, to a large degree, still a mystery to science. Nevertheless, I went to Dr. Looove today and got medication that may help. Hopefully, in time my tics will return to their “normal” level as they have in the past when I’ve had a flare-up.

I’m “coming out” about this, so to speak, for a couple reasons. First, I hope that by giving a personal connection to someone suffering from tics it might inspire people to tell fewer Tourette’s jokes. People make these jokes all the time assuming that, because no one is yelling obscenities in the room, there is no one there to be offended. But that’s not true. 19% of children suffer from some kind of tic disorder. So whenever someone makes one of these jokes there is a chance that 1/5th of the people around them struggled with tics as kids, and don’t find Tourette’s jokes funny.

More importantly, I am discussing this because I am tired of “covering” my tics. This is just part of who I am, and someday, when Annie asks why daddy blinks so much, I’m not going to be ashamed to tell her the truth.

107 Comments

You probably know my son has TS, and that he was suspended from his private school because of it. We fought that decision and took his case to the federal level under his rights with the American’s with Disabilities Act. It’s a serious business, this tic stuff. I’m glad you’re speaking out. It’s one of the reasons we stood up for our son and his rights. It’s one of the reasons I blogged about it and didn’t back down when I was threatened by his former school. Good for you for giving an adult face to Tourette’s. It’s so much more common that people realize, and so much less of an issue than it needs to be.

Lynnette says:

Thank you for writing this. My 11-year-old niece was recently diagnosed with “Tourette’s symptoms” and they are trying to make them go away with medicines. I had no idea how common it is or that there was a Tourette’s spectrum. I will need to research further now to reassure her mother (a consummate worry-wort) of some of the statistics you’ve quoted.

When I was about 8 years old I developed a tic: opening my mouth really wide and stretching my chin downwards as far as it would go. This drove my family mad, made my face hurt and caused me a lot of embarrassment. Since then I have had a variety of tics, and OCD behaviors which disappear as suddenly as they come, but I often feel that first one is just there in the background, just waiting, waiting….
I now take an anti anxiety medication which helps a lot (although it wasn’t prescribed for the tics) and I hope you get similar relief from your new medicine.

Regin says:

My niece had a few tics…including making a hmmm sound while reading, playing, and watching tv. After going to see the dr, my niece started kindergarten and her teacher was amazing about it. We told her up front what was going on and she said that if she would handle it and there would be no issue whatsoever in her class bc of it. My niece’s dr told my mom that if she didn’t grow out of it within a few yrs, she would need to be tested for tourettes. Luckily, she grew out of those tics within the past yr (only 6 mths after she was told this). I can’t believe that ppl would make jokes or light of something like tourettes. I don’t see what could possibly be funny about it.

To be honest, when I saw the title of this post, I half-expected it to be an attempt at comedy . . .

That said, I once had to help a friend “come out” about her son’s condition to his school. This isn’t the States, there was a language/culture barrier and the whole scene was heartbreaking for her and an eye-opener for me. Her son seemed to take it in stride but eventually they moved back to the US.

Good for you for talking about it. I have never been a person to make jokes about Tourette’s, but I really didn’t know much about it either, so your post was really informative to me. I hope the new medicine helps!

Thanks for sharing this. I don’t think I realized how common tic disorders are. I appreciate the desire to inform your daughter as soon as she notices. That’s one more person that understands that can make it easier for someone else who was on your situation. The world can always use as much understanding as possible.

Susan says:

Hello
I admire you for writing about your tics. I teach at a very child centered school for children and I have worked with several that have tic disorders. One student in particular gets botox treatments which greatly reduced his tics and has really helped him. I have not done a lot of research on it but who knows maybe something to look into! Thank you for the great post.

Kate says:

Mike, thank you for bringing this to light. My son is 11 years old and very recently has begun a series of tics. Do you have any advice on how to talk to children about it? What would you have liked someone to say to you as a child? I’m not even sure if he’s aware that he does it, but I have asked him about it in regards to being nervous or anxious about something. He says he isn’t nervous or anxious. He’s in his first year of middle school and I’m so afraid he’s going to be made fun of.

Mike says:

Hi Kate,
Discussing this subject with children is hard because they are likely very sensitive about it. However, I would say that it is best not to draw attention to the tics when they happen. This was frustrating to me, and the more people around me discussed them as they happened them the worse they became (and the more self-conscious I became). Also, try to not to ask them to stop twitching, or to say things like “Do you think if you tried really hard you could not do them?” These comments bugged me because these are involuntary actions. Tics don’t have anything to do with being nervous or anxious either, though people assume this, so I wouldn’t ask him that.

As for being teased at school that is such a hard, heartbreaking one. Kids are kids, and they likely will tease. I was teased about this, and it hurt a great deal. I would try to tell your son that lots of people have tics, and that other people have things they have they have to deal with too. I just saw online that David Beckham, Mozart, and Dan Ackroyd had/have Tourette’s. That might be something to mention – that successful people have dealt with this too. In the end making your son feel confident about himself, and aware that lots of other people go through this, should help.

I understand wanting to “hide” your tic. It’s normal to hide anything anyone would consider “abnormal”.
Some of us have brown eyes, some of us are rounder than others, some of us are shy, some of us are not traditionally beautiful. And some of us have tics. It’s part of you, not the sum of you. And anyone who can’t or won’t see past that isn’t worth your consideration.

Sue says:

Tourette’s affected our severely handicapped son years ago, Mike. He had some tics involving movements, but mainly it was loud cursing, yelling out, and screaming. As his physical condition rapidly worsened about 10 years ago, (and has now remained at a standstill) he now shows very few symptoms of Tourette’s. There are still times when he does curse, and yell out, but it’s a very seldom thing. It seems whenever we watch comedy on cable,,that some comedians always feel that they need to make fun of people’s disabilities. Thank you for telling us about how it affects you, Mike, and keep us updated how the medicine is working for you. Also thank you for being so real. You & your family are the best. Hugs to all of you

Allie says:

Hey Mike…I’m glad you posted this b/c my 7 year old niece was just diagnosed, and it was the first time anyone in our family learned this was a spectrum disorder. She’s learning how to cover her tics, but thankfully not because anyone has made fun…yet…she is just very aware of them. Unfortunately, some of her tics could be socially awkward as she grabs her pants frequently. I had NO idea how common this was until we started talking with others and found many of our friends had or have it still, and we had just never noticed. I agree with the PP, thank you for putting an adult face to the disorder and for educating others that not all people scream obscenities.

Angela says:

Even better, we should be teaching our children about acceptance for everyone, not just kids that are ‘normal’. I wish you didn’t feel the need to hide, but I certainly understand why. I have had trichotillomania since I was 12, and my only urge to pull is my eyelashes. I never knew why, never knew that anyone else did it until I was 25 years old. I WISH I could ‘just stop’ but that is impossible. When someone notices that I don’t have eyelashes, it’s like I have been caught, found out, exposed. I choose not to medicate, but I’m scheduled hypnosis which I PRAY helps me with this – and I tell myself that many people have many issues – we just don’t see them. Unfortunately, ours shows to the outside world. Normal is extinct, Unique is cool.

Liz says:

Thanks so much for posting this. I have a much younger sister (she’s 10) who’s been pulling her eyelashes out for a couple of years, and we haven’t really known what to make of this, except to gently reminder her, when we see her doing it, to do something else. (She does this especially badly during the school year; not as much in the summer when she’s always moving).

I had no idea that this was (potentially, for her) a condition and not necessarily just a nervous kid thing. My mom took her to the doctor a couple of times thinking that itchiness from allergies could be the source, but the drops don’t really help and my sister insists it’s not itchiness anyway, and I believe her. Anyway, your comment about your own experience has given me a different way to think about my sister’s. Thanks. And thanks, Mike, for your post as well.

Rachel says:

I just had to comment on this…I had a camper at camp with trichotillomania…she actually had to have surgery to remove a hair ball (she ate her hair after pulling it out). Before we met her, we were all nervous…what if she pulleed our hair out?? (Call it a lack of understanding!) I remember walking this gorgeous little girl with a shaved head to the infirmary to get her meds and her explaining to me, “I have trichotillomania, I pull my hair out.” I asked her why and she said, “The mean monster makes me do it”. We started talking about it more, and as time grew on, she felt comfortable with asking me to tell her when she was rubbing her eyebrows. It was the most growing experience for a 17 yr old (me) that one could have. Good luck with the hypnosis!!!

I’m not aware of anyone in my life that has Tourette’s or “tics” , but I hope they would feel comfortable enough to not feel like they have to hide them. Kids can be cruel and so can adults. We don’t always think before we speak, I know I can be guilty of that on occasion, but I try. I’m glad you spoke out because I think this helps remind us all that we should think more before we crack a joke or are too quick to judge.

Laura says:

Thank you for sharing. I’m so sorry you have to deal with this. My father has some similar tics. It is exhausting to him also, and I wish I could take this challenge from him. I hope the medicines calm things down for you. As an aside, I saw an excellent movie this weekend called “The King’s Speech.” Turns out King George IV (Queen Elizabeth’s father) dealt with a debilitating stammer/stutter for much of his life. Colin Firth (King George) was so, so good and after reading your post, it made me think it may be a film you would enjoy.

Melanie says:

The little girl next door has TS. She has some verbal and physical tics. My children love to play with her and one day my daughter asked about the tics. It was a good opportunity to talk to her about differences in people and why it is ok. I think the neighbors tics scared my daughter a little bit. She would make a noise and jump with both feet. Once she understood that these tics were out of her friends control, she never brought it up again.

mp says:

Jenni says:

Thankful to read this today. My 7 year old son was diagnosed at five and some days he looks so tired it breaks my heart. Thanks for the insight. David can’t really tell us how it feels to have tics and you gave me a glimpse at what he goes through everyday. Thank you!

Priya says:

One of my best friends has Tourette’s and when I hear the jokes (and you are right, they are all too common) it makes me cringe. Her tics come in the form of an arm shooting out or her head jerking to the side. When it happens in public and she gets the inevitable stare, she just let’s it roll of her back but I know that inside, the stares, comments and jokes really hurt.

Thank you for sharing this, I hope that the medicine helps you to be more comfortable.

Carol says:

As I wipe my tears, I have to say, you don’t know how often I hear my 11 year old daughter speak your words. I have tried to teach her to be very open and just tell people that she has tics, but of course, kids thinks she has these “ticks” crawling all over her. Adults aren’t any better in telling her to to get whatever is in her eye out. I too wish I could find the trigger. The only thing I am leaning towards is allergies. Doctors have proven to be useless because they say the medicine is worse than the tics. She does get worn out from them as well, but all in all I am so blessed that she is a very well adjusted, happy go lucky child. Thanks so much for sharing this.

I used to get in trouble so much for eye rolling when I never did it. At least not on purpose. I still get asked why I roll my eyes and it’s so upsetting. Thanks for spreading a little light as to why I was always in trouble in school.

Shannon Olgin says:

I suffer from a rare vocal disorder. And just like the tics, I never know when it will worsen. It is difficult for me to talk on the phone or read to my children. When it is really bad, it is hard for me to even talk at all. It is often depressing when you are isolated in a room full of people. Since I am young, nobody assumes that anything could be wrong with my voice. And just like you, I don’t correct people when they assume I have laryngitus. I’ve even had people snap at me to calm down and not get upset when I’m on the phone and my voice is cutting out due to the disorder.

I think many of us live with things that others can’t understand. When I read your blog and others, I am reminded of how small of a thing the loss of my voice is in the big picture. But I still miss it.

I wish it didn’t take us decades to realize that everyone has something—the “perfect” girl in the next office has a hidden deformity, the “tough” guy sleeps witha stuffed animal, we get scared in the dark, we can’t eat banana peppers after 4pm…whatever.

michelle in MO says:

Thank you for sharing such a personal issue. I used to have an online friend whose daughter developed TS as a pre-teen. She had much the same tics as you have now. She would bob her head forward and backward to the point that she eventually got a hernia that had to be operated on. As far as I know she is now college age and is doing well. Her TS was brought on by stress. Her mother was diagnosed with cancer. That has since been resolved.

Lindsay says:

There’s a young man in my karate class with some very severe tics. Everyone lets him do his thing without comment because we’re all adults and we understand what’s happening, but you can tell it bothers him. Thanks, Mike, for speaking out. It’s nice to get a perspective from someone who experiences these issues.

I think it’s human nature to make jokes about things we don’t understand (I’m as guilty as anyone of this) but I wonder if future generations are going to look back and shake their heads in shame at how lightly we toss around jokes about people with serious afflictions.

Eva says:

Mike,
I am a school nurse in a large high school and we have currently got three students out of 2400 that have some variation of Tourette’s Syndrome. One of these students in particular is like a child to me, he was actually just in here with me as I was reading your blog post, and I am really excited to show this to him when I see him again later today. He is a Senior now and like you, he has good stretches and bad stretches with his tics, both verbal and physical. He is in the process of applying for college and there is a lot of anxiety for him going forth, as over the years he has become comfortable here where most of the students know about his condition and no longer comment on it. Now he is about to go out into the wider world where he will once again be under the curious (and sometimes offensive) eye of new people, which of course only ramps up his anxiety and worsens his tics.

Accounts like yours are always so refreshing, because being able to show Abraham other people who are or have been where he is bolsters his confidence so much. When there is something particularly unique about you that draws the attention of others whether you want it or not, it always helps to know that you really aren’t the only one. Thanks from this nurse for openly discussing and humanizing Tourette’s, your words have the power to go very far and I know for a fact in this case they will reach an adolescent who is always bolstered by the realization that he is not the only one.

I’m 6 weeks older than my cousin, when we were about five she was diagnosed with TS, the easiest way to describe it is that she sounds like the always has the hiccups, plus a tic where she bobs her head to the side.

It has always bothered me how people so easily make TS jokes, and like you said, because they don’t hear someone screaming obscenities think that no one in the room is bothered by these.

Elizabeth says:

It takes a lot to share such a personal secret with all of us and thank you for that. I do not know anyone personally who suffers from TS but sadly I know way too many people who aren’t afraid to make fun of it. Thank you for speaking out.

Kirsten says:

I’ve never yet taught a kid with Tourette’s but at least now I know that if I ever am in the position to teach a child with tics, I’ll be able to handle it better and assist the child. You’ve taught me something today. Thanks a lot. 🙂

Glenda says:

Amy says:

I think a lot of people can relate to you on this. I have some tics. Although I’ve never formally been diagnosed, I’m pretty sure I have a touch of OCD. Over the years the tics have come and gone, but it does seem that its kind of getting slightly worse as I get older. I’ve thought about asking the doctor if medication might help me, but I’m scared of the possible side effects.

More importantly, I’m scared if I take the medicine to curb my OCD my house wouldn’t be as clean anymore. 😉

High five to you Mike!! My 16 year old nephew has tourettes. He actually has many of the exact tics as you (blinking, eyerolling, etc). His has been mild at times where you dont really notice also. Recently it has gotten pretty bad. They moved to a new state and as the new kid in school he was an easy target to make fun of. I saw him post on facebooj that he was on the roof trying to decide which way to commit suicide. Of course me and everyone else who saw it alerted mom. He ended up being admitted to a adolescent behavior hospital that night and stayed there for a week. It helped TREMENDOUSLY! Obviously he still struggles with the tourettes but emotionally he is doing so much better. Thanks for sharing your story. Tourettes isn’t funny! Samantha

MinNYC says:

Michelle says:

Wow. I have been a faithful reader of Heather’s and have cried and laughed many times reading this blog. I’m a 30 yr old mom living in LA, and my kids are total Maddie and Annie fans. Even my 5 and 6 year old “girls are yucky” boys ask to watch The Amazing Annabel all the time.

I just have to say THANK YOU so much for writing this post and “coming out” . I saw the Tourette’s title and my stomach got tight, I was afraid it might be meant to be something funny. The reason is because about 4 weeks ago, out of the blue, my sweet little girl suddenly started turning her head to the sides and rolling her eyes up. At first, I just thought she was being silly. By the next day as I saw it was happening constantly and she hardly seemed aware of it, I was terrified thinking she had a brain tumor or something. Called and made an appointment with her pediatrician and waited anxiously for the next week until we were to be seen. I watched her like a hawk, and researched online. I read about tics and Tourette’s syndrome online, and felt horribly guilty that as a teen I can remember making Tourette’s jokes.

Anyways… I’m rambling. As of right now my little girl’s Dr. isn’t too concerned and thinks it could just be a Transient Tic thing that will just suddenly go away the same way it started. I hope so.

The kids went back to school yesterday from their winter break and I’m just terrified that she’s going to be teased and bullied. Those second graders can be brutal!

Lisa says:

Thank you for sharing and trusting us with this. My 11 year old son has been a stutterer since the age of 3. Now, entering into his tween and teenage years, he is becoming more and more self-conscious about it and some kids use it as an opportunity to mock/bully him. He was in speech therapy for many, many years which improved his condition but did not, and will never, cure it. It is a part of who he is and I wouldn’t change a thing about him. He is a talented, smart, funny guy – just like you! 🙂

A boy in my class in elementary school had Tourette’s, and was often seen displaying facial tics through out the school day. the teacher and his parents were upfront with the class, explaining the disorder, and I can honestly tell you, from third grade to the day we graduated, I never heard anyone make a single joke at his expense. And, I truly hope that created an environment where he felt safe enough to relax and not be so self conscious.

It’s so important to talk about these things. And I am so glad you did.

Christina says:

Great post. I’ve worked with adults and kids with developmental disabilities, mostly autism. A lot of my kids would also have tics and we would just try to give them some other stimulation when it got bad. Some kind of OT usually did the trick. If the space or tools we needed for OT wasn’t available, we’d just settle for massage and give the kids a nice, firm arm or back or shoulder or leg (or whatever is needed) massage for just a couple of minutes. I know those kids had a myriad of problems that are beyond what the average person (even the average TS or tic sufferer) has experienced but it’s all related. Maybe you should consider OT or massage therapy (that is if you haven’t already).

Thanks for posting this. There are too many kids in this world who are never exposed to the realities of life (poverty, illness, disorders, etc.). They never get the chance to see that people are just people no matter the package we come in and while it’s good to be curious and ask questions, it’s not okay to bully or remain constantly afraid of the things we don’t understand.

Tammy says:

My little brother has Tourettes. His tics are such a part of him, I wouldn’t know what to do if he didn’t have them now. It is hard though when he meets new people and what not. And he is 29.
He is very open about it, because it is just part of who he is. Like you, it’s not WHO you are, just a part of you.

I kinda understand what you go through, I have a learning disability and it’s difficult to convey to people what it’s like because they look at you like your deranged..I have Non Verbal, ADHD and slightly Dyslexia and when people hear that, they automatically do the droopy head pitful look “Really, you seem so normal?” which is the most aggrevating statement in the world because those of us will disabilities lead perfectly normal lives, it’s not a crutch or something we’ve contracted it’s something we’re born with, my aunt use to say it was a gift, that we were given it to educate others on what they don’t understand..

With my LD, I know what my limitations are I know i can be an a graphic designer or anything that resembles that..Math is out of the question because my brain refuses to cooperate and I get lost in my own town where i’ve lived for the past 25 years and I have a problem with social skills, like if someone tells a joke with a straight face i can’t tell if their kidding or if they tell a sad story with the same straight face i think it’s a joke and laugh which has gotten me in trouble with friends, acquittances and even a few cops lol I live in a constant state of worry that what i do or say will offend someone..I also worry that someday my kid will have to go through this agony like i did ..

Kristen says:

My husband has TS. He didn’t exhibit any symptoms until adulthood. His brother has sever tics. My husband blinks, rolls his eyes, twitches his nose, and when it gets really bad, his entire face is affected. He says when he tries to stop the tics, it feels like a pressure builds up and hurts…so when he allows himself or can’t control it any more, it is almost like a relief to twitch. No treatments he has tried have worked, or if they did, the side effects made it not worth continuing with the meds.
I hope your writing about your battle with TS informs someone who otherwise would have no clue about the disorder. I hope you find some form of treatment that works for you.

Lisa says:

I’ve been reading this blog for years and rarely comment, but I wanted to thank you for this post.

My son is 10. I think he has a mild form of Tourette’s with the tics (especially the eye-rolling and blinking), but I’ve been on the fence about it because it comes and goes. We’ve finally just realized that it’s coming on more with stress or when he feels anxious about something. Like your parents, we tell him to stop and he tells us he can’t. What you wrote about yourself sounds so similar to what he does that I am now a 100% believer in the fact that he can’t stop. You just saved one little boy from having to hear “just stop that!” ever again. For that I thank you and I know he will too!

Starting last summer my then six-year-old daughter developed a variety of tics. We took her to a pediatrician, neurologist, and acupuncturist. We tried all sorts of treatments and even went on a gluten-free diet. My dad has always had some minor tics, and so I suspect that like you, my girl may fall into that category of people who deal with this their whole life.

I was wondering if you had any specific pointers for parents dealing with kids with tics? It’s fairly easy to be supportive in the home but I struggle with how to advise her on how to navigate the world outside our house. Any coping methods or strategies you could pass along would be appreciated!

Meyli says:

A friend of mine has physical tics, but also verbal ones. In high school, most kids didn’t know because he was kept in ‘special’ classes most of the time (even though he has no learning problems) but the kids that did notice were pretty ruthless. Thankfully rude school kids are no longer a problem, and among friends his tics are either ignored because we’re so used to them, or laughed off as a joke. They are part of who he is, and hey, everyone has things they can’t control that are different from other people, its just no big deal. Saying ‘pickles’ under your breath over and over while the waitress is trying to take your order is something we can all giggle about later 😛
Good for you, Mike. Every mention of TS will educate someone else. I hope you find medication that works well for you, and start to feel ‘normal’ again soon!

Great post! My husband doesn’t necessarily have TS, but was diagnosed with some mild spectrum autism with tics when little, but since it’s only ever been tics, no one really knows what the diagnosis is. He still has stress related tics, that usually manifest as him doing some hand fluttering while rubbing his nose. Usually people just think it’s a sinus thing.

Thanks for sharing, Mike. I have been concerned for several months that my son may have Tourette’s. Knowing that it is a spectrum disorder makes more sense for him. The eye blinking was one thing that really got me doing some research. He also has a tic-like nose clearing that drives me batty. After doing some research, I realized that the coughing he used to have — and that was diagnosed as mild asthma — may have been his first symptom.

I brought this all up to his pediatrician recently who said that many kids his age (nearly 11) have tics and that they typically go away, but that if it got worse we could have him evaluated. We are seeing a mental health professional with him next week and hopefully we’ll have some answers.

As a person with my own mental health issues and who is very aware of the stigma associated with it, I applaud you for speaking out.

Meyli says:

I do the same thing! It’s like a sudden, shiver attack, but I’m not necessarily cold. Happens all the time, regardless of circumstances. I have no idea what the reason for it is, but you’re not the only one 🙂

Brandi says:

He is and always has been a tender and wise kid…He handles his tourette’s so well, he puts me to shame. His tics were very strong from ages 8-12…. and have gotten much better in the last couple of years. …I struggle sometimes, but I have always just made sure he has confidence and knows he is perfect the way he is. He has tons of friends, is in all advanced classes, and is just a really neat person. If people ever do ask him why he is doing a tic. He just tells them and they move on. He treats it like no big deal and thats why those around him do. His tics have been super low-key to almost non existent the last couple of months and have sort of picked up in the last 2 weeks…but they always slow down and go away and always change so we just work through the waxing and waning nature of them….

I love this post for so many reasons. Mostly, because I sometimes worry about how his Tourette’s will progress, but knowing that incredible people like you have Tourettes, and marry incredible people like Heather….It proves what I have always known deep down. If his Tourettes stays or goes he is going to be just fine : )

Thanks for educating people on this. I hear you about the ignorant Tourette’s joke. I cringe every time… Hope this tough time passes quick!

thank you so much for this. my fiance has mild tourrette’s, and i know it’s been difficult for him to live with. he also doesn’t go around shouting obscenities etc., but the jokes still hurt. he mostly let’s them go, but the offend ME. big hugs to you – i know it’s not easy!

BethRD says:

Tics are definitely something to think about when a child has a symptom that seems to be an allergy or mild illness. My son has some tics on and off, and the first one I noticed consisted of sniffing. Despite my familiarity with the problem (I have a good friend with a pronounced tic disorder), it still took a long time before I thought to ask him if he thought the need to sniff was in his nose or in his head, instead of just telling him to quit sniffing all time. He sounded SO relieved when he said, “Head!”

Amanda M. says:

Jokes are how we cope with living in this weird world. Making fun of someone is not cool, but just general jokes…? A joke about a disorder, about being blond, about a priest and a rabbi walking into a bar, about cancer… I love jokes. I adore you, Mike, but I’m not one to let those who are unable to find humor in the unpleasantness of the world drag me down.

I don’t hide my tics. There’s not really much point in doing so. Then again, I’ve never been teased, which I believe is due to my honesty and sense of humor. I understand not everyone has been lucky enough to have developed a bully-defense system as strong as mine.

Regardless, good for you for casting off the shackles of shame and whatnot.

Brandi says:

Jokes are one thing, but the fact that every Tourette’s joke revolves around the cussing aspect of the syndrome are what is offensive. Only a small amount of folks with TS actually display this symptom and then people completely misunderstand the syndrome itself. We have made sure our son keeps a sense of humor about his tics, but when celebrities or media focus on one small aspect of Tourette’s it is frustrating.

Meathead says:

You think you might be ashamed to tell your daughter you have Tourettes? I think you should be ashamed of that! Especially considering it is genetic, and it’s possible Annie could have tics as well. Would you be ashamed if she had it? Probably not. Well, I HOPE not!!
I know I’m going to get yelled at, but that’s how I feel. I have been with my hubby for 7 years. He has Tourettes. I can’t imagine how he would be. I think if he was embarassed by his tics, I would probably call him out on being vain!
I’m sure that’s not how you are, but kinda..? Ya think? Maybe I’m wrong. (I often am :P)

Anyhoo, After blogging for 3 years, I am SOOO HAPPY you are posting about Tourettes. I have NEVER seen ANY post, other than my own, about Tourettes or tics. Yay you!

People make fun of Tourettes because they are uncomfortable. They are uncomfortable because they don’t understand. They don’t understand because Hollywood movies are where they are educated on it. I think it’s up to people with Tourettes and their families to educate. Tell 5 people, they tell 5 people etc etc etc.

I’m glad you “came out”.

PS – have you read that people with tics/Tourettes usually have very high IQ’s? 😉 (It’s true!!)

Bethy C says:

Thank you so much for sharing about Tourette’s. My 7 year old son started developing tics this past summer. He also has several other conditions that we were already seeing a neurologist for, so this was just one more thing to add to the list. It is so painful to watch my son struggling with his tics. Thankfully, other children have not made negative comments about his tics YET! and I’ve been diligent about letting adults he comes in contact with to know what is going on ahead of time. Thank you for sharing your story with all of us.

I am glad that you are becoming comfortable enough with your Tourette’s spectrum to make it public. My symptoms started 30 years ago at the age of 6 with barking noises (more of a yelp that is also often mistaken for hiccups). Rapid blinking is another manifestation for mine.
Stress, lack of sleep, illness, and having something persistent troubling me set mine off. Getting upset about tic-ing definitely makes it worse.
I remember well the teasing, ostracization, and even being beat up in school.
The symptoms definitely lessened by 75% at least in my twenties.
It took me a long time to accept it and to learn to make jokes about it (such as offering to give them away when I am having a very bad day ;-).
I play the confessions by ear. If it seems like the effort would be beneficial or if it is someone new I’ll continue to know I’ll explain but often with the great public I also excuse myself for having the hiccups.
Usually when I do explain it to someone he or she is very interested to hear about it and often asks questions.
I would imagine that all you have been through over the past few years would increase the internal tension. I know when I am tic-ing I feel wound super-duper tight inside with anxiety.

I don’t experience the sore muscles and back as you do and I hope that the medication you received helps you to feel better.

It’s pretty neat to be able to read the experiences of others with Tourette’s. It seems Tourette’s is still very misunderstood by those who have not experienced it but I think it is starting to come out of the dark bit by bit, and that is awesome.

Nix says:

My middle son Trevor has Asperger’s Syndrome and in addition, developed transient tics when he was small. Thank you for this post about Tourette’s and tics, because I agree, there are people who don’t understand how hard it can be trying to live with this sort of situation. Trev’s come and go, and change, at the drop of a hat. When he was small, he used to suck on his lower lip until he had a huge red chapped ring all the way down his chin! Thankfully, the worst since he’s hit middle school has been a blinking/sniffing combo but kids are mean and he’s had to deal with some not-so-nice situations. I applaud you for standing up, standing out and speaking out. Understanding can make all the difference!

Denise Jones says:

Hi, Mike. I work in the special ed dept and have seen/heard just about everything. I am very sensitive to the special populations in our world and can’t imagine why anyone would stoop so low as to make fun of something they’re obviously too ignorant to understand. Like everyone else has said, just be yourself. If someone can’t deal with it, they’re the one with the problem! Love to you and your beautiful family!

My youngest son started having tics in 6th grade (making gulping sounds in his throat when he feels the slightest bit of nervousness). It’s embarrassing for him and he tries really really hard not to do it but so far has been unable to control it 100%. Luckily they have not gotten worse or progressed to anything more. He has been able to minimize them by deep breathing and eye closure but that is another thing that brings attention to him during class (when it happens most often). It breaks my heart to know that kids point it out to him and that it just makes him nervous and then things get worse. He’s a great kid who has a lot of friends so I know it could be worse (he could be bullied all the time) but it is still so very sad.

Why can’t we as a society get to a point where we all realize that each of us has something that makes us different? I know the ones that I am talking about are just kids but it looks like from what you are saying you have adults who are involved. UGH!

Molly says:

Sandra, has your sons teacher talked to the students in his class? I know some teachers who (without the child in the room, and after asking the child’s permission) have explained tics to their students. It might lessen the comments.

I am not sure yet. The issue is that he is in High School which means pulling aside 6 different teachers to discuss this with each classroom … which probably would be a bit helpful but ultimately, I worry that it would blow up in our faces. My son is so extra sensitive about it that anytime even his brothers bring it up he is upset for the rest of the day. I worry that if ALL of his classmates know then it could give us an issue of some little bully trying to make fun.

Maybe I read too much into it and shelter him too much … ugh, this parenting thing is hard some days! 🙂

M says:

When my little brother was in middle school he developed a tic disorder. It was a result of PANDAS, too many strep antibodies in his system. It increased when he was stressed and he would twitch until he fell to the ground. He had vocal tics and yelled himself hoarse. We pulled him from public school because kids were spitting on him and he got beat up at private school. It was so bad he tried to kill himself. At 13. It was and will forever always be the worst day of my life.

He got treatment to get the strep antibodies out of his system and the tics stopped. He’s 18 now and in college and he’s HAPPY. But I still have a special place in my heart for anyone with a tic. Two of my students have tics. What amazes me is how their peers accept it and how the teachers accommodate them to lessen the tics. It gives me hope.

Thank you for sharing your story Mike. My brother used to get terrible neck spasms from his tics. I’m a big fan of heating pads and epsom baths, but I know you’re in good hands with Dr. Looove. Thank you. And don’t ever be ashamed of your tics. You’re a badass mo-fo dude. Tics and all!

Danielle says:

I don’t have Tourette’s, although I have been asked many times if I do. I have stomach spasms that make me squawk, for lack of better term. I can completely relate to your exasperation and embarrassment when you have flare ups. My squeaks seem to be triggered by my acid reflux disease. I don’t typically mind people’s comments (people are bound to comment when one makes a loud, random, squawking sound), but it gets irritating after a while of trying to keep a straight face when people are downright rude or insulting about it.

Veronika says:

My best friend’s husband has Tourette’s syndrome. We learned a bit about different syndromes in high school, so when I met him and her I pretty much knew he had Tourette’s. He blinks his eyes a lot, but more intense like squeezing his eyes shut for a couple of seconds. He also purses his lips and makes a sound in his throat. It is just part of who he is. Their daughter is 8 and she has Tourette’s too. They suspected it at first because she had some repetitive tics when she was sleeping, like squeezing her hands shut over and over. Now they know what to avoid in her diet. They avoid all red food color for one, because it is a huge trigger for her symptoms. I would absolutely hate for him or their beautiful daughter to ever be the source of someone’s joke. {{ hugs}}

farfalla says:

Thanks for sharing this. I have major depression/atypical bipolar disorder. The number of casual bipolar jokes I hear are astounding. As you say, it’s as if the fact that I’m not in the midst of an obvious manic state assures everyone that no one present is bipolar.

I really appreciate your “coming out” — in the past few years, I have “come out” about my own issues and talk about it freely (in places where it’s relevant, not just at random). It makes people uncomfortable, and I’m sure that sometimes people think differently/less of me, but I think it’s worth it. No one is going to stop making bipolar jokes until they are aware that a) there are people with bipolar disorders all around, and b) it turns out we’re really just people.

I waited a long time to get treatment, because of the stigma of mental illness, and I don’t want anyone else to go through that. So I’ll make people feel uncomfortable, if it makes anyone any more accepting/understanding of mental illness.

Anyway, that’s all to say that I really appreciate you sharing. It can be difficult, but I think it really makes a difference — not just for us, but for people who come after us.

Kristi F says:

My son has Asperger’s syndrome, and he has a couple of tics that go along with it. It is hard to be “different” because so many people are not very tolerant. Before he was diagnosed (he was a sophomore in high school before we got an official diagnosis because he was so incredibly good at compensating) it was very hard for him to deal with all his issues but now that it has a name he handles things much better. It takes courage to speak out; thanks for doing so on behalf of people everywhere who are not neurotypical and get tired of people thinking jokes about their disorders are funny.

I started having tics when I was ten. That year was the most miserable year or my life. That year, and throughout middle school, I was made fun of everyday (that isn’t even an exaggeration) because of it. At the same time, the kids also made fun of Tourettes. They never actually figured out that I had it, though, which always confused me.

It went away when I started high school. It came back, though not nearly as badly, in college. But I still have days where I feel like I can’t be around people. Last September was really bad, and there was honestly no reason for it. Somehow, nobody notices. I don’t understand. There are a bunch of other kids who even know that I used to it (we had to write a memoir in one of my classes, and I wrote about that awful time in my life because it was really the only thing I could write about that mattered. Anyway, all of the memoirs were workshopped in class. It was one of the scariest moments of my life, especially since I was (and am) friends with all of the kids, but they were cool about it) but they haven’t put it together that I kind of still do.

I’m lucky that my parents have always been amazing about it. My dad actually thinks he had Tourettes as a kid. He had tics, definitely, but his mother just put that down as him being a, “nervous Italian.” But no matter how great my parents were, it changed me. Having something so horrible and helpless made me feel totally worthless. Even though I had a pretty good high school experience and love college, I’m still so used to thinking I’m less than everyone else, just because of these stupid little tics. I wonder a lot what I would be like if I never went through what I did. I know people usually say that hardships make you stronger, but I’m not sure that’s possible with Tourettes. For me, at least, it keeps me from feeling whole.

Anyway, I really appreciate this blog post. It’s a really hard subject to talk about. I really admire both of you guys.

Thank you so much for sharing. For whatever reason, our society doesn’t treat things like Tourette’s and ADHD the same way that they treat other disorders and ailments. My husband has scoliosis and I don’t think that any adult in our circles of friends would ever crack a scoliosis joke, but it seems to be open season for things like manic depression, ADHD and Tourette’s.

I was diagnosed with ADHD at the age of 35 even though it’s been something that I’ve struggled with my whole life. Somehow my incessant fidgeting was dismissed as shyness and, since I got good grades in school everyone overlooked the fact that I was extremely disorganized and flighty.

This was a really good time for me to read this post because I’ve been struggling about whether to be open about my ADHD. Thanks again for sharing.

Funny you posted this when you did as I just recently watched a movie about a teacher with TS.

My son was having what the drs called tics…he would constantly twist & crack his neck…and like you, now matter how many times he was asked to stop…he said he couldn’t. However, over the past year he has almost completely stopped.

Hi Mike,
So glad that you shared this! It’s something I think most people aren’t aware of. About 5 years ago I met a coworker’s brother who has TS. He didn’t yell out profanities or anything like that, but was constantly clearing his throat, sniffling, and making a grumbling noise. I assumed he had a severe cold until my coworker later shared his brother has TS. I then learned all about it from my coworker. At that time HBO had a documentary on children with TS. I found it extremely informative! I’m so glad that I am now educated on the matter and can pass on the information to my children. TS isn’t some funny matter as presented in movies where people just yell out swear words, and jokes can hurt! Good for you for sharing that!

LuckyMe23 says:

My fiance has suffered from tics since 1st grade. He used to lick/chew his collar. They diagnosed it as stress caused by an overly zealous teacher, but he later had a few seizures and was diagnosed epileptic. When we first started dating I noticed the frequent blinking at first, but it’s funny how after 5 years I almost never notice it now. He’s also developed a new throat clearing one that really bothers him, because it makes his throat so sore. His doctor prescribed some meds to see if that will help, and so far it seems to have decreased a bit. Thanks so much for “coming out” about this, because it is a lot more prevalent then people realize.

Kristi says:

Wow, Mike. I’m so glad you posted about this. A few years ago, I watched a special on kids with Tourette’s and it broke my heart to the point that I was crying. I had never really understood it. Thank you for spreading the word so more people can be educated on Tourette’s. I hope the medication eases your pain quickly!

Kat says:

My son has a tic from something called sensory integration disorder. Basically it means that he doesn’t process input from the senses like everyone else… it build up for him until he can’t “handle” it anymore and it become a tic. He paces and clenches his hands repeatedly. I have been asked so many times if he is retarded, has tourettes, has autism… what’s WRONG with him. To me, nothing! LOL I am glad you are speaking out, because like you said, there are A LOT of reasons for a kid (or adult) to have a tic or repeated movement like a tic. Hoping yours go away altogether but at least get better! 🙂

Cristina says:

My son tics – he has since he was a baby – he also suffers from anxiety. Luckily, he hasn’t been made fun of for his tics, I think his classmates are used to it. He’s in GATE and has been with the same kids since elementary school (he’s now in 7th grade). He’s a baseball player (GO ANGELS! – sorry Heather), and has little rituals he does before batting and between each play. Sometimes it drives his coaches crazy, but they learn to live with it, they can tell he can’t help it. I actually love the quirkiness in his tics.

Speaking of tourette’s though – I used to work with a doctor who had tourette’s. He was a neurology resident at the teaching hospital I was a neurosurgical nurse at. I loved and appreciated that guy so much. His tics were really bad and it was hard to watch him struggle with speaking at first, but I think it took great courage for him to go into medicine.

brooke says:

thanks for sharing this. i’m 30 years old and have never been diagnosed (i’m not a doctor goer toer heh) but have spent my life bouncing on any springy surface i can find or rocking in just about any chair… mobile or not… mostly involuntarily (can’t focus on anything other than NOT moving if i force myself to sit still). my older brother was recently diagnosed highly functioning aspergers and i suspect i fit that bill too. it was disconcerting for years having people walk up to me randomly and ask if i was autistic (really, who does that?!) and me only having rainman to compare to felt pretty perturbed by all that. but over the years the one thing i learned was to embrace my unique ‘spazzies’ as i like to call them. so i’m a bit odd… normal is a cycle on a washing machine. i’m proud of who i am and my accomplishments, and that’s all that really counts.

Thank you for being brave enough to share your story. There is nothing about it to be ashamed of or have to hide, and even just from the comments on this post I can see that you’re affecting people positively by sharing your story.

This entry breaks my heart. Though I know that’s NOT your intentions, when writing this (I’m just emotional, I guess). I’m sorry you had to go through that, and that you felt the need to cover it up. Still, your honesty AMAZES me. Thank you for sharing this with us.

Deirdre says:

thank you for this. My 4-year old son has a tic disorder that has recently gone from mildly quirky to very noticeable and I worry for him. My husband and I have both dealt with our own tics in the past, but for the most part, we did outgrow them–at least the obvious ones. I appreciate hearing your point of view. Thank you for your openness and honesty.

Arlos says:

I would’ve as an adolescent. Even though psychologists say all that self-consciousness is part of adolescence I personally think it’s our society. We teach kids that they are supposed to be offended by these things by letting ourselves be offended and by validating them being offended.

We should teach kids not to be offended, and make it fun by teaching all the ways of creatively asserting that you’re not offended by teaching kids how to dismiss insults through sarcasm and nonsense.

Kara says:

I came across this as I was reading older posts and it really struck a chord with me. I think my husband has some form of Tourette’s. His thing is making this noise in his throat that he passes off as sinus problems when people notice, he’ll also count to 5 a bunch of times but I don’t know if that’s TS or OCD, and bite down on his teeth really hard or sometimes twitch his head which hurts his neck after a rough day. It’s especially noticeable when he is nervous. It usually doesn’t bother him but when we are out and about people will stare at him and I can tell it gets to him. When he went to the doctor, they just kind of brushed it off. I think he’s given up on getting help, but I was wondering, are there things that can be done to help lessen the symptoms? He takes Celexa for anxiety disorder but I don’t see it helping with the tics. If you have any advice, I’d really appreciate it. I’ll love him no matter what, I just want him to be more comfortable for himself.

Mike says:

Your husband’s situation sounds similar to mine. Unfortunately, it does seem like doctors have a hard time figuring out how to help people who don’t have full blown Tourette’s. When my symptoms got really bad last fall my doctor prescribed a medication which ended up making me really sick and anxious, and in a Sophie’s Choice type situation I picked twitching over the medication’s symptoms. My doctor said we should try another medication, but I decided against it when my symptoms improved somewhat. I think that really is all the doctors can do though… prescribe different medications and try different dosages hoping for the right combination.

I can definitely relate to not liking the attention you get in public too. Unfortunately (again) it just seems like something we have to deal with. Sorry I couldn’t be more help. I do think that working with a doctor to find the right medication is an option for improvement even though in my experience it is not easy to find the right medication.